July 28, 2014

Nineteen Words

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , at 11:04 am by autismmommytherapist

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“Come here Justin” I say quietly, and as always my towel-clad boy obeys, happily sliding into my lap for his post-bath cuddle.  We have a routine for our bed-time ritual that we adhere to religiously, and I can tell my son enjoys the familiarity, smiling at each step in our path to bed. Tonight however I’ve decided to deviate just slightly from our norm, as I want to try something different within our usual arsenal of me saying the coveted nineteen words he’s so recently acquired, then waiting eagerly for his response.

Tonight I simply hold up the word list, and wait.

He looks at my mouth curiously, waiting for those hard-won words to spill forth, but for once I just point at the list.  Justin regards my outstretched finger for a good thirty seconds, then I swear I see a slight grin slide across his face as I listen in amazement.

 

“Mama”

“Dada”

“Hop”

“Pop”

“Mop”

“Top”

“Zach”

 

Ten years ago we were told if he didn’t speak by the age of seven he probably never would.

We heard his first coherent utterances at ten.

 

He takes a deep breath and shifts slightly on my lap, then forges on.

 

“Help”

“Ball”

“Apple”

“Bubble”

“Eat”

“Door”

 

Ten years ago we were told there was a good chance he’d never read.

We watched him master his first sight words at three.

 

Justin seems to gear himself up for his finale, not the slightest bit daunted by the fact he’s facing new words he’s just learned this week.

 

“Bed” (a favorite)

“Boat”

“Bus”

“Boot”

“Bat”

“Bee”

I can feel his focus shift as his eyes slide away from the paper I’m clutching.  As I balance my boy I sense the display of his newfound skill is over, and I see him eyeing his toothbrush as he scoots off my lap.  It’s a momentous moment this, one I want to savor as I think of all the “can’ts” and “nevers” I was told or read about a decade ago, many that sent me hurtling toward despair.  Justin may never have conversational language, may never even use a technological device to solicit more than his basic wants and needs.

But no matter what, he has this.  He can read to his mama out loud.

And I have a reminder to always push him to be his best self.

Nineteen words.

 

 

 

 

 

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March 17, 2014

Savor the Moment

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , at 1:06 pm by autismmommytherapist

Disney and Halloween 2013 184

I hear Justin’s yellow chariot about a block before it reaches my driveway, and make a mental note to tell his bus driver to check the brakes.  It’s freezing outside (as usual this winter), so I wrap my warm woolen scarf tightly around my neck before I shove Cosmo into my coat pocket and step out of the warm cocoon of my car.  I navigate pockets of the relentless ice plaguing my driveway and follow the carefully carved path my husband has created for us, and I hear my son well before the bus stops.

Within moments he is greeting me at the top of the steps with his aide close behind.  As usual I thank his chauffeurs and make room for him to descend, grabbing his backpack as he moves from towering over me to mere inches from my diminutive height.  I smile and say “Hi Justin” as I have done for years, but with perhaps more emphasis as I am trying to generalize a reciprocal greeting his speech therapist is attempting to teach him at school.

I anticipate a sofly emitted “hi” or a mad dash for the door for his coveted soft pretzel, but today is different.  Today my severely autistic son looks me straight in the eye, and with a hint of a smile says “Hi Mommy,” then grabs my scarf and leans in to plant a big kiss right on my lips.  It is the first time he has ever put two words together for me with or without being prompted.

Too soon the moment is over, then there’s still the mad dash for those carbs.  He is so my child.

We’re starting to elicit a few words from Justin after ten long years of speech therapy, ABA rewards, and my working with him whenever possible.  Over the last few months we’ve begun to hear coveted consonants such as “t” and “p,” sounds initially evoked only within the confines of his school or therapist’s home, now reproduced on demand for me.  We’re slowly building a vocabulary me and my boy, one which even includes saying “pop” as a fill-in from his favorite Eric Carle creation.

It is thrilling to hear these words and word approximations, and I know as soon as we’ve shed shoes and scarves I’ll yell our triumph to my husband upstairs, and run to the phone to call my mom.  There will be an email chaser to his private speech therapist and to the school speech therapist who has been working so diligently on this skill, taking the time to film me greeting my son on his ipad, and carefully rewarding his attempts with my homemade chocolate chip cookies that defy my usual ineptness with all things kitchen-related.

In a few moments I’ll be besieged by requests for juice and snacks from both of my children, will find myself tripping over hats, coats and mittens as I navigate our narrow hallway.  There will be the daily homework struggle/bribe with my youngest, voluminous paperwork from their respective schools to pore over, lunchboxes to unpack.  In short, the McCafferty clan will soon be immersed in its daily organized chaos.

But I won’t allow it to happen before I take the time to savor this moment.

There have been some really difficult periods in this household.  I have two boys with autism, and both have undergone months or even years where silence ruled our world, gastrointestinal distress claimed the day, and sleep was an unreachable luxury.  We’ve also endured periods where my eldest expressed his emotions primarily through aggression, with medication, therapy, and love incapable of providing any respite.

In the past there have been weeks where I’ve been struggling to make it through the end of the hour, much less the day at hand.  Throughout these challenging times I’ve generally been able to invoke my mantra of “This too shall pass,” one of my beloved grandma’s favorite maxims that for our lives at least, seems to hold true.  Those four words have been the touchstone that have help me transcend our troubles, minister to my boys, trade frustration for an embrace.

I guess you could say those words are my personal hashtag.

We go through cycles of frustration here, but what I’m finally beginning to remember as we now rarely descend into darkness that for us, these difficulties always pass.  Thankfully, the stomach issues which plagued both boys have all but disappeared.  The all-elusive sleep I longed for both me and my sons almost always graces our presence nightly, bringing much-needed rest and respite from the day.  Through a variety of strategies, and perhaps mostly maturity, my eldest son has learned to quell his frustrations, now resorts to his iPad or even a word or two to get his needs met.

And yes, despite years where all of our queries met our son with silence, we are finally being graced with the mecca of the spoken word.

I hear my youngest bellow for “juice!” and realize my moment for contemplation is now on hold, to be shelved and savored for later.  Soon pretzels will be distributed, beverages will be poured, and the minutiae of a day away discussed.  My eldest will escape upstairs to his coveted computer, and I’ll tussle with my youngest about exchanging jeans for his karate outfit.  Our life, “normal” as we know it, will take over.

But I promise myself this before I am swept up.  I have goals for my sons, some of which like speech have seemed impossible to achieve, unattainable brass rings.  My boys constantly shatter my preconceptions of what they can achieve, resist any limitations I might unconsciously impose upon them.  They will continue to learn.  They will continue to grow. On their own paths and in their own time, progress will continue to be made.

And each and every time they achieve success, their momma must remember to savor the moment.

September 23, 2013

Chaos and Clarity

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 11:02 am by autismmommytherapist

Summer 2013 Part 2 083“Are we there yet?” my smallest son whines as my family trudges through the extensive Great Adventure parking lot, and although his tone is annoying I have to smile, because I can clearly remember peppering my mom with that same query in this very parking lot about a hundred years ago. “Soon honey, soon” I say, and drop Justin’s hand momentarily so that Jeff and I can swing Zach and thereby distract him.

We give him a few whirls, then our tired middle-aged arms give out, and we tell him he has to walk the rest of the way. I reach out for Justin’s hand once more, then realize he is gripping my arm as he moves in front of me, stopping me dead in my tracks. He gifts me his intense gaze, then he tries to talk.

My ten-year-old son attempts to speak an entire sentence.

My heart pounds to the staccato of his syllables, consonants like “b” and “m” punctuating the air around us. I have no idea what he’s saying, me, who can divine what DVD he wants when he hands me a book filled with hundreds, me who can discern what snack he desires at a venue prior to his pointing for it, me whose gut tells her which bedtime story he’ll choose every night before slumber.

He grips my arm tightly, searches my eyes as his lips form the sounds, pronouncing them with an almost feral intensity. I think I hear an “I” and an “l” in there somewhere, and given that I definitively heard an “m” I go out on a limb and respond “Justin, I love you too.” He responds with the faintest of grins, grabs my hand tightly, and resumes his loping gait toward our waiting car.

My husband and I lock eyes. We are momentarily stunned. I struggle to hold back tears.

This isn’t the first time we’ve had spontaneous speech. There has been an elusive “mama” or “more” thrown our way on occasion. But the lion’s share of Justin’s language has been in response to a question put to him regarding a concrete concept, such as a snack desired, or the choice of a destination.

We’ve also had some success with a repertoire of repeated words out of context, a litany of language we require he attempt or give us some approximation thereof, mostly so he doesn’t lose what he’s worked so hard to acquire. The latter is in no way “typical” conversation, but it is the primary way in which we elicit words from him. What just happened in the parking lot is different. It’s spontaneous. It’s purposeful.

It simultaneously renders me elated, and breaks my heart.

It’s the earnestness that gets me, that elusive thread so pervasive in my son which propels me to work so hard for him, to “get” what he wants. In that moment he wanted to convey something sacred to him, and all I can do is hope his momma got it right. I resume our trajectory toward our SUV and glance at my spouse, who says “he really tried that time”, and I nod in response.

The truth is I mostly relinquished my longing for words a while back, replaced it with the desire for any form of communication which would work for my son. We’ve had some success with the iPad and a program called Proloquo2go, but he predominantly employs it at school with his academics, is more reluctant to make the effort at home or in the community. Despite his hit-or-miss usage in the house I’m so grateful he has any means with which to convey his needs. I continue to hope he’ll one day type his wants, and dare I hope, his thoughts, as he matures and progresses in his education.

And yet I know a part of me will never completely give up on my desire to hear his conventional speech. While I’ve locked that dream away, put it on a shelf far out of reach, I remind myself it’s okay to dust it off occasionally and revisit.

Because with autism, you just never know.

My eldest son sights our car and increases his pace, the “e” sound surrounding us in his joy, as he knows both rest and juice await him. I realize that the entire episode lasted less than thirty seconds, that my youngest child is completely oblivious to what transpired. I know that it might happen again. I acknowledge to my fragile heart that it might not.

I remind myself that this child does not require spoken speech to tell me he loves me.

Jeff and I load children and paraphernalia in our waiting chariot, and I have to smile at the yin and yang of it all. This is how things go in our family. There is progress made, and progress lost. There is elation at skills learned, and sadness at such profound struggles. There is chaos, and there is clarity. There is autism.

And at this moment there are two urgent requests for juice boxes, and my husband complies as I put the car in drive and head to our next destination, the journey always challenging, but compelling in its beauty and its breadth.

April 28, 2013

The Nod

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , , at 10:11 am by autismmommytherapist

Easter 2013 025

It’s Thursday morning, just a regular day before school starts, and I am trying for what seems the hundredth time this week to figure out something my eldest child will possibly consume for breakfast. Over the course of the past seven days I’ve hawked three different cereals, pancakes, waffles, even French toast, all to no avail.

I hate sending him to school on an empty stomach, but I seem to have run out of options as I whip eggs and milk into the frothy concoction which will soon fill up my stomach. I’ve offered Justin eggs before, which he has regarded with all the enthusiasm of a patient approaching an overdue root canal. Today, just for the heck of it, I turn to look at my tall son who is immersed in his DVD player and ask “Justin, do you want eggs?”, fully expecting no response whatsoever.

And in mid egg-flip, my son looks me in the eyes and nods an emphatic yes.

I fling the spatula down on the unsuspecting stove, and run over to my boy, afraid I’ve misinterpreted the first time Justin has answered a “yes or no” question in our home. I turn off the DVD player and angle him toward me, and pepper him with queries I’m certain he’ll soon find tiresome.

“Is your name Justin?” (nod yes). “Is your name Zachary?” (nod no). “Do you think your mom’s gone crazy?” (okay, I didn’t really ask that one, but contemplated it for a moment there). Truth is, I asked about a half dozen more close-ended questions, and he responded appropriately every time. I did what I lovingly call the “happy language dance”, rescued my almost-doomed eggs, and served my son a generous portion of my take.

First a few spontaneous exclamations of “Mama”; then requesting me unprompted on the iPad; now this. As I drink my orange juice, I admit, I’m a bit verklempt at these new developments.

I recently read a study informing me that while researchers previously thought that the language window swung firmly shut on most autistic children by age four, newer studies have shown that most children on the spectrum do acquire some language. In fact, the study says that almost half go on to be fluent. While we’ve kept Justin in private speech therapy and continue to work with him at home, by the time he turned nine and had shown no real progress, I began to let my dream of him having some semblance of functional speech go by the wayside.

My disappointment was somewhat mollified by the fact he is able to use his iPad quite functionally, particularly in school where he employs the device for requests and academics. In those dark, desperate days of toddlerhood when his primary method of communication was digging his fingernails into my tender flesh, I used to pray for any methodology whatsoever which would facilitate communication, be it technology or a Ouji board (again, those were desperate days).

As he’s grown and has shown great aptitude for various media my fears we’d never share even the most rudimentary standards of language disappeared, and I’ve grown quite fond of ProloquotoGo, the program through which he is able to make his needs known. Still, I admit deep in my soul I longed for a word or two, or even for him to have the capability to answer those simple yes and no queries without running to his device.

Now, he can.

There’s a great article on the Autism Speaks blog by Geri Dawson, outlining new findings about speech in autistic children, and nine other things we know about autism that we didn’t know a year ago. Among those findings, researchers are developing medicines to address the core symptoms of autism, namely communication deficits, social withdrawal, and repetitive behaviors.

Symptoms of autism are now being detected in children as young as six months of age. Prenatal folic acid, taken in the weeks before and after a woman conceives, may reduce a child’s autism risk. We are slowly making progress in deciphering autism’s many mysteries. My son, after a long, sometimes agonizing wait, is making progress too.

His mother couldn’t be more proud.

March 12, 2013

Talk Amongst Yourselves

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , , at 9:14 am by autismmommytherapist

Justin Turns Ten 043

Dusk is fast approaching, and as I swing into Justin’s speech therapist’s driveway I see a shadow rocking back and forth behind her glass door, its rhythm momentarily interrupted by the arc of my headlights as they cut across my son. As I turn off my engine I hear Justin register his approval at my arrival, his happy “eee” cutting across the lawn as I make my way to the front stoop. He is beaming, and I can tell he had a good session by the look on his face, and the similar expression on his therapist’s.

“How’d it go?” I ask, as Justin simultaneously shoves his big red goody bag into my arms and tries to push me out the door. “Today was pretty big” she replied, and I thwart Justin’s plan by putting down the red bag, and giving her my full attention. “While he was waiting for you at the door, he asked for you without prompting” she says with a grin, and mine matches hers, because we both know this is a momentous moment.

My boy wanted his momma, and he asked for me with words.

Justin’s been using the iPad more at home and in the community, and just a few months ago asked for me spontaneously while using the device (I was on a twice yearly shopping expedition with my sister-in-law and niece, it figures). We’ve been practicing the sentences “I want Momma”, “I want Papa”, and “I want Zach” (the last uttered sans “Z”, it actually sounds cooler that way), but to date they’ve always been prompted and repeated out of context, perhaps after teeth brushing, or while waiting for the school bus.

It’s been exciting to hear my eldest child utter a full sentence, fun to hear Zachary (the child who never stops uttering full sentences) cheer his big brother on and encourage him. To me, however, the entire process doesn’t mean much if it’s conducted without meaning, if the sounds are solicited from him when he may very well be thinking about his bed, or popcorn, or the hundredth rendition of “The Very Hungry Caterpillar” that I will likely be reading to him that night. His mother craves context, and today, I believe my son has given it to me.

Today, he waited at the threshold, was asked what he wanted, and clearly requested my presence spontaneously for the very first time. In the movies, I would have driven down the cul-de-sac immediately as the last strains of his short “a” sound drifted into the atmosphere. In real life, it took me a few more minutes to arrive, which gave him time to make a half dozen more attempts to verbally summon me, enough effort for his therapist to make certain she’d heard him correctly. To be completely honest, I’m not sure how many people would comprehend the first two-thirds of his phrase, although with satisfaction I say that his “momma” is clear as day.

It’s taken a decade of work, but every vowel, every hard-won consonant, was worth it.

As always, I have to follow this accomplishment with what I like to call the “autism caveat”, which includes the fact that in the future he may only repeat this charming sentence on demand, or perhaps never again. Although his talented speech teacher could easily get him to recreate the experience for me now I won’t ask her to, because it’s enough to know it happened of his own will, his own ability. For just a moment I recall that studies proclaiming that children with autism who don’t speak by four have recently been proven false; that in fact, more than half become proficient speakers, and two-thirds can master simple phrases.

Then my son once again shoves a heavy, huge red bag into my hands, looks at me with utter urgency, and propels me to the door handle. Time for this momma to cease her musings.

I capitulate to his demands and release him from this house, but I am elated at his triumph, and for a few moments I allow myself to bask in it before I contemplate what I’ll make for dinner. I hug his teacher good-bye, and follow his galloping form back to our vehicle, his own sounds of triumph at escape punctuating the brisk air. I acknowledge we just might have the start of something great here.

And as I buckle him into his seat he grins at me, and I swear he knows exactly what he’s done.